Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination.

Autor: Chen A; Department of Pediatrics, Wake Forest University Medical School, Winston-Salem, North Carolina, USA., Ahmad M; Center for Bioethics, Cleveland Clinic, Cleveland, Ohio, USA.; Department of Bioethics, Case Western Reserve School of Medicine, Case Western Reserve University, Cleveland, Ohio, USA., Flescher A; Program in Public Health, Department of Family, Population, and Preventive Medicine, Stony Brook University, Stony Brook, New York, USA., Freeman WL; Northwest Indian College, Lummi Nation, Bellingham, Washington, USA., Little S; Sanford Health, Transplant Center, Bismarck, North Dakota, USA., Martins PN; Department of Surgery, Division of Transplantation, University of Massachusetts, Worcester, Massachusetts, USA., Veatch RM; Kennedy Institute of Ethics, Georgetown University, District of Columbia, Washington, USA., Wightman A; Divisions of Nephrology and Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, Washington, USA., Ladin K; Departments of Occupational Therapy and Community Health, Tufts University, Medford, Massachusetts, USA.
Jazyk: angličtina
Zdroj: American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons [Am J Transplant] 2020 Aug; Vol. 20 (8), pp. 2009-2016. Date of Electronic Publication: 2020 Jan 18.
DOI: 10.1111/ajt.15755
Abstrakt: Disqualifying patients with intellectual disabilities (ID) from transplantation has received growing attention from the media, state legislatures, the Office of Civil Rights, and recently the National Council on Disability, as well as internationally. Compared with evidence-based criteria used to determine transplant eligibility, the ID criterion remains controversial because of its potential to be discriminatory, subjective, and because its relationship to outcomes is uncertain. Use of ID in determining transplant candidacy may stem partly from perceived worse adherence and outcomes for patients with ID, fear of penalties to transplant centers for poor outcomes, and stigma surrounding the quality of life for people with ID. However, using ID as a contraindication to solid organ transplantation is not evidence-based and reduces equitable access to transplantation, disadvantaging an already vulnerable population. Variability and lack of transparency in referral and evaluation allows for gatekeeping, threatens patient autonomy, limits access to lifesaving treatment, and may be seen as unfair. We examine the benefits and harms of using ID as a transplant eligibility criterion, review current clinical evidence and ethical considerations, and make recommendations for transplant teams and regulatory agencies to ensure fair access to transplant for individuals with ID.
(© 2019 The American Society of Transplantation and the American Society of Transplant Surgeons.)
Databáze: MEDLINE
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